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Results Establishment of clubs and registers increased known prevalence across Indonesia: a 4.5 fold increase in CAH, from 65 patients (2008) to 293 (2014); 2 fold increase in OI, from 35 patients (2013) to 70 (2014); 5 fold increase in Diabetes, from 156 patients (2009) to 960 (2014). Access to medicines improved: donations of hydrocortisone (oral and injectable) and fludrocortisone co-ordinated by KAHAKI and CLAN, with efforts to register nationally; bisphosphonates included in national insurance scheme following launch of FOSTEO. Translation of educational resources and focused training for health professionals coincided with reduced presentations of children to hospital in adrenal crisis and diabetic ketoacidosis and reduced mortality from CAH and Diabetes. Media reports increased across all groups and information sharing amongst community members enhanced by WhatsApp.

The role of community development in improving awareness, diagnosis and management of childhood non-communicable diseases (NCDs) in Indonesia